IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

Jonathan Edwards said:
I am sure that is what he is thinking or perhaps rationalising. I had exactly the same fears when I first came across the problem - but before I realised just how much people's understanding of the problem needed to change. My concern is in the wording of his response. He talks of a more limited approach to protect what is good - but what exactly is that? And in what sense is it different from just removing CBT and GET, as IiME are asking?
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I just refound this thread and am skimming pages 2-14 in an attempt to catch up (currently on page 11).

My first impression of Mark Baker's response is as follows, forgive my perhaps ill-informed paranoid speculations:

This is not about ME or GET or CBT. It is about the government-backed BPS approach to benefits, which is too big for even Mark Baker. So any change in the NICE guidelines made necessary by these troublesome ME people cannot challenge the BPS-backed benefits policy of blame them and get them back to work.

Mark Baker's reply reads as if BPS is alive and well in the background and he's been talking with his fingers crossed behind his back all the time.

Yes, we'll scrap the guidelines. But that doesn't mean we'll scrap GET or CBT, we're actually going to scrap a sub-section of patients, it's much easier. If you thought "scrap" meant GET or CBT that's your problem, I never said that.

Also, scrapping the guidelines and starting from scratch doesn't mean that the new guidelines will necessarily be much different from the old ones. If you thought that's what I meant, that's your problem, I never said it.

We are going to protect the good, which means keeping GET, CBT and our clinics. If they aren't working for some, it's because somebody isn't understanding / implementing our carefully nuanced and crafted recommendations. We reserve the right to blame the doctors, the therapists, or the patients. It is not the fault of the guidelines. They are a thing of beauty, but it may be possible that in some cases they are being applied inappropriately or to the wrong people.

The existing recommendations are carefully nuanced and crafted to give power and choice to patients. The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable. To this extent, some clarification may be required prior to the completion of the new guideline.

I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible. However, scrapping the entire guideline now would be massively counter-productive
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Most likely planned outcome to me is that the existing guidelines are largely retained, but with a warning to doctors / therapists / centres / patients to JUST DO THEM PROPERLY. Maybe there'll be some more jobs for the boys running training courses on how to steer the ship. There will also be an acknowledgement that CBT and GET are not appropriate for all patients, there are some who call themselves "severe ME" (whatever that is). OK, to show that we're responsive to patients' input, we'll rebrand those patients and tell them to bugger off. We own ME/CFS now, and it is what we say it is. You may have thought you had it and come and tried to spoil our party with your complaints and horror stories, but actually you've got something else. The name for you (and appropriate treatment) is yet to be decided, but someone will be getting a shitload of money to make something up. Bye bye.
 
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TiredSam said:
Most likely planned outcome to me is that the existing guidelines are largely retained, but with a warning to doctors / therapists / centres / patients to JUST DO THEM PROPERLY.
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There will also be an acknowledgement that CBT and GET are not appropriate for all patients, there are some who call themselves "severe ME" (whatever that is).
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This is why we desperately need a measurable biomarker, if anyone tried to pull this crap about cancer patients, diabetics or MS patients they would be laughed out of the room (and hopefully put in front of an ethics board)
 
large donner said:
claim that they have now refined the GET CBT category down to the people who can benefit from it.
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Instead of starting with the problem and trying to find a solution to it, they invented a solution first and are now trying to find a problem that they can apply it to. Having sold their solution as soon as they invented it, the job of finding the right problem is now a matter of urgency.
 
I fear @TiredSam might be right; I carefully thought this after reading Baker's answer to the liME letter, too. This thought deepened after the discussion what would happen with the ME/CFS centers. I could imagine they substitute ME by any other psychological diagnosis in future (they are so similar, the symptoms! :rolleyes:) - but who knows?

More is needed to overthrow the power of the BPS folk. It's politics. The BPS model fits perfectly modern economic needs and ideologies (e.g. everybody's his own creator of happiness - just exercise, work, talk and think positive, et voilà!), therefore their big success in almost every part of life.

@Jonathan Edwards put it pretty suitably with his prayer metaphor: Their beliefs are like a religion, and we are trying to take away a main part of it. This won't happen without a fight.
 
If the results are biased, how can they be clear? Is he talking about large effect sizes? If I remember right PACE didn't have large effect sizes in comparison to the already inadequate control group. I think he may just be making up his own reality.
 
strategist said:
If the results are biased, how can they be clear? Is he talking about large effect sizes? If I remember right PACE didn't have large effect sizes in comparison to the already inadequate control group. I think he may just be making up his own reality.
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Exactly. I don't think this person sees that. The 2nd part of the sentence suggests they maybe truly believe the bias cannot be significant. They may even be confusing bias with noise.
 
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